Blogs

The illusion You Will Be Forever Able Bodied And The Limits Of Empathy

Coyne

      By James C Coyne.   This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]

Theresa May’s Disability Announcements ‘Are Just Cynical Leftovers’

dns-sticky-short1

    By John Pring in Disability News Service.   Disabled people’s organisations have reacted with suspicion and some hostility to the outgoing prime minister’s attempt to shore up her “legacy” with a series of disability-related announcements. Although some of the measures announced by Theresa May (pictured) were welcomed, many user-led organisations questioned why she had left […]

Accessible Transport From Disneyland Paris To Paris Gare Du Nord

First-Time-at-Disneyland-Paris-feature-1024x768

  By Pippa  in her Life of Pippa Blog.   Whilst this may be a bit of a niche post, I wanted to share my eventful first experience of public transport abroad as a wheelchair user, travelling from Disneyland Paris to Paris Gare Du Nord. It was a lack of clear information online that prompted […]

How My Life Has Changed Since I Developed ME/CFS

Life Changing Event

  By Lisa Alioto in The Mighty.   When I was me… I always greeted you with a smile. I may have tried to say something funny to put a smile on your face and I was always excited about whatever plans we had for the day. When I was me… I worked out. Sweaty, […]

Why Having ME/CFS Makes Me Dread The Summer

summer

  By Jo Moss in Journey Through The Fog.   After I read the news that the temperatures in the UK were going to reach 27 degrees this week, my anxiety levels rose dramatically and panic set in. I hoped I would having longer to adjust to the summer – what happened to spring? – […]

ME/CFS Patients Worldwide Face Scepticism And Ignorance From Doctors

Doctor

  By Jo Moss in A Journey through the fog.   I would like to take the opportunity, for ME awareness month, to talk about the problems ME/CFS patients like myself face getting a diagnosis, and also the general ignorance surrounding ME/CFS within the medical profession. I know not all doctors are bad, but sadly […]

The Struggle To Balance Between Resting And Using Energy When You’re Chronically Sick

Chronic

  By Chelsea Morris in The Mighty.   Balance! How do we achieve it? I think for any human being balance is very difficult. But for those of us with chronic pain and disease it seems to be even harder. I wake up one day and feel actually pretty good. So I want to accomplish more than […]

The Severe ME Bedbound Activity Masterlist: Part 1

Severe ME

  By Sarah Stanton in Medium.   Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

Trial by Error: A Letter To Bristol about My Recent FOI Request; Update Added

David Tuller

    By David Tuller, DrPH   UPDATE: Within an hour or two of writing to Bristol, I received a response from the university’s director of legal services. Here’s what she wrote: Dear Dr Tuller Thank you for your email. The Information Rights team is making good progress on clearing the back log, your FOI […]

18 Songs That Were Written About Chronic Illness

listen-to-free-music-online-1167

    By Paige Wyant in The Mighty.   Music is often a source of comfort and emotional healing. Many people with chronic illness in particular find that certain songs or genres can be powerful in helping distract them from symptoms and cope with all the stresses and frustrations of life with a health condition. For Mighty […]

The Crash That Follows The Push Of ME/CFS And FM Awareness Day

Feeling_Fatigued_and_Drained_Ayurvedic_tips_to_Re-energize_Yourself

  By Jodie Smith in Phoenix Rising.   It’s been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill […]

When People Judge Me For Not Working Because Of My Chronic Pain

ChronicPainManagement

  By Lauren in The Mighty.   A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now. We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just […]

Running On Empty – Do Not Pass “Go”

Empty

  By Sam in the My Medical Musings Blog.     We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike. I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. […]

Why I Think ‘Chronic Fatigue Syndrome’ Is The Worst Name Ever

Fatigue

    By Adele Paul in The Mighty.   Imagine the following conversation… Friend: Heard you weren’t feeling well lately? Me: You could say that. Friend: So you’re just tired all the time? Me: Yeah, and a few other things… Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me […]

Why Are We So Quick To Judge ME/CFS Recovery Stories ?

Recovery

  From A Journey Through The Fog By Jo Moss.   As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]

Struggling To Accept The Days When Illness Keeps Me From Doing Anything

zmbnq7ui6mu-jesse-bowser

  By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

My Favourite Chronically Ill Entrepreneurs

IMG-3721

    By Pippa in her Life Of Pippa blog.   I once saw a quote reading “when you buy from a small business, an actual person does a little happy dance”, and it really stuck with me. I absolutely love the sentiment of supporting independent creators, all the more so when I know they’re […]

Older And Poorer Communities Are Left Behind By The Decline Of Cash

Money

  By Daniel  Tischer, Jamie Evan’s and Sara Davies in The Conversation.   A future without cash seems almost inevitable. Recent statistics paint a damning picture: while cash accounted for 62% of all payments by volume in 2006, this dropped to 40% in just a decade and is predicted to fall yet further to 21% by 2026. […]

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

David Tuller

  By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]

Severe ME: I Had To Fight The People Supposed To Help Me

1_4kxXhaiPKSCp2p8lwV_Isw

    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Better Treatment Needed For 77,000 British Columbians With ME

Lonely-man

  By Sue Khazaie in The Province.   Imagine you are living the life of your dreams. You have a great job, a happy marriage and love traveling. And then you get sick. Really sick. Soon you can’t work, go out, or perform basic household chores. Within weeks, you are bedridden and totally dependent on […]

We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients

Gaslighting

    By Siobhan Simper in The Mighty.   Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]

Saving Money On Theatre Tickets As A Disabled Young Adult [AD]

Pippa

  By Pippa, in Life Of Pippa.   This post and associated social media posts are kindly sponsored by Triple 7 Events. Find out more about them and book some bargains on their website here [AD]. Let’s be honest: being a theatregoer certainly isn’t the most affordable hobby in the world, particularly as a disabled young person. Whilst […]

19 Things People With ME/CFS Wish Others Understood

Lonely

      By Paige Wyant in The Mighty.   Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]

Understanding ME And Chronic Fatigue Syndrome In Children

Children

  By Claire Tripp in teachwire.   Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp…   You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

Pace-Study-debunkedrev-330x330

    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

7 Things All Chronically Ill Dancers Can Relate To

Pippa

  From Life Of Pippa.   Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]

Interview Part 1 – What Does ME Feel Like ?

f86a5b3cfc09b9273b604893e761d433353224618-1399888343-537099d7-620x348

  From Find Millions Missing.   Esme and Millie learned over the years how to cope with ME. Esme (21) is a medical student who was diagnosed with ME when she was in school. Millie (23) was diagnosed with 17, right before her final school exams before she headed off to University in England. Both […]

8 Common Myths About ME/CFS Debunked

myths

  By Jo Moss in A Journey Through The Fog.   For ME Awareness month I want to tackle some of the common misconceptions surrounding this debilitating illness. The lack of belief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide. Due to the disbelief, misconceptions, and stigma that are attached […]

Probing The Holes In MUS

4562341921_7ebd53115b_z

    By Spoonseeker in spoonseeker.com.   This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all […]

Who Gets CFS/ME And How Does It Start ?

alexander-technique-and-cfs-me

    From #FindME.   Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), can affect anyone, even children. Fibromyalgia is a related disease that affects the joins in the body, causing excruciating pain. CFS/ME is most common in women and tends to develop between your mid-20s and mid-40s. Famous celebrities, such as 71-year-old […]

“Just Be Positive!” Toxic Positivity, ME/CFS And Fibromyalgia

toxic-positivity-header

  By Lori Madeira and Cort Johnson in Health Rising.    In the face of a chronic illness, our friends and family can resort to simple solutions: just try and be positive they might advise. Look on the bright side. Focus oun what you can do. It’s not bad advice, but it often comes across as out […]

The York ME Community © 2015
Powered by Live Score & Live Score App